Difficult to say…

Is your life today what you pictured a year ago?

I really find it hard to predict

A year ago I didn’t think I would go through so much, grief, hospital appointments, memories, loneliness.

Stepping through that year, from there to here, then to now, I had hoped that I would be starting to have better times by now, but the administration of suffering is hard to maintain. One thing after another, a bill here, a repair there, treatments, investigations, infections, tremors, everything. I must have cost the nhs thousands. It’s hard to keep up and also chase things up.

I’m not really where I wanted to be now but hopefully will be in 2025.

Time to sort things out

Do you need time?

Yes I need time

Health, life, memory, stuff.

I need to have time to learn about aspects of my health. I’m gradually finding things out that I never knew. I need to listen to experts and scientific fact and find out how I can support myself.

My life needs organising, the last year has been horrendous. Lots of stressors and worries. Trying to sort out paperwork and filling in so many forms. I keep finding things I should have done.

Memories are fading of my soul mate. I long to hear his voice. To hear a recording of him would be good. But seeing photos can cut too deep. Maybe I need more time to come to terms with what’s happened.

Stuff? That’s the pile of stuff that’s in front of me, things that need organising, removing or storing. All that takes time, which is what I need!

I could do more

What could you do more of?

If I could do more exercise, I think I would be healthier. But everytime I try and do something? Something else goes wrong with me. I’m like a car that had had all it’s wires disconnected and put back in the wrong places. My head would fall off if it wasn’t screwed on! I know I need to do more but I’ve hurt my leg (well my cat stuck her claws in it) and it started to weep. Now I’ve got a cold. I just feel fed up of being a wreck.

I think I will do something about it soon, in the hope I can improve my health. Fingers crossed.

Compassion?

I just wrote this in response to someone complaining about people being on benefits. I’m trying to point out that you don’t have to look disabled to be disabled, and most people would not choose to be poor.

I gave up working to look after my hubby because of his severe PTSD and my health started to deteriorate. I tried to set up a small business but couldn’t earn enough to manage and when he died I was left with my work pension and a bit of savings. My Diabetes had never been good and two and a half years ago I started to shake. That turned out to be Parkinsons disease. For several years I’ve had to wear a mask at night because I suffer from sleep aponea. I lack strength in my arms because of a frozen shoulder and the spasms from Parkinsons in my arms and legs. Now I might have heart failure after several years of atrial fibrillation. I used to be able to cycle up to 100 miles with hubby and was quite fit.
In all that time until I gave up work to look after hubby, I was only unemployed for 6 months. I have full pension contributions.
I appreciate that there are some people that don’t want to work, but would you know about my disabilities if I hadn’t just told you? I know I’m deteriorating but I want to keep going. There are a lot of people out there with hidden disabilities.
Why do we always complain about benefit claimers when 80 men in the world have as much money as half the world’s population? That’s 4,000,000,000 people? Many of these billionaires inherited their money and avoid paying any tax? The poorest don’t chose to be poor. Imagine yourself going to a food bank once every two or three months and getting 3 or 4 days food? Or desperate people renting houses they can’t afford in poor or moldy homes. Would you choose that?
I’m sorry for this long comment. I can tell you about all the hospital visits I keep having to attend. The scans and blood tests. I try and keep going. Life is difficult. We all have our crosses to bear as they say. It’s that old thing of don’t look at the speck in someone else’s eye and not see the beam of wood in your own. It’s easy to criticise but we need more compassion.

It depends

What time do you go to bed and wake up currently?

I’m not sure when I’m going to bed if I’ll be able to sleep. So therefore I don’t know what time I will wake up! I’ll try and get to bed at the same time each night but then anxiety or pain or other health issues can keep me awake.

Basically I try and sleep on my sides or back, but then find I need to turn over, before having to move again. Never really getting comfortable. I also generally wake up once or twice during the night, which means that I often don’t get back to sleep again.

After a restless night I may sometimes stay asleep till lunchtime. It’s a good thing that I’m not working in a nine to five job!

Driving

What makes you nervous?

As you get older you become more aware of your infirmities. If you are sensible you will take that into account when you drive. It’s not just for your benefit, it’s for the people who are driving or who are travelling around you.

Things like sight, strength, hand eye coordination, reaction times are all important. You must notify the relevant authorities if there is something wrong with you.

There are many places I would have happily visited until recently, but I’m nervous of travelling any distance without someone alongside me. I will continue to take care and drive carefully and not put anyone else at risk.

Pharmacy blues

Something is going wrong at the pharmacy I get my medication from. Last week there was a sign saying they were short staffed and that they were installing a new computer system. All the staff were different so I couldn’t really ask what was happening. I ordered my medication on Thursday and was told it would be ready for Tuesday. I went down today as I’d got soaked yesterday. The usual assistant was back, but she only had one set of tablets for me. She said come back in an hour for the rest. I gave them a bit longer and went back after a couple of hours. Unfortunately two lots of tablets were still missing. Could I go back tomorrow at 1?

I wouldn’t mind but about five other people were complaining of having to return for missing medication. I wished the assistant a quieter time and that things would get better!

Cycling

What’s the most fun way to exercise?

I’ve cycled for exercise when I was younger and I loved the freedom of it. You could travel for miles, with the ability to see places you could never get to on foot and if you travel in a car or a train the world goes by almost too fast so that you don’t get the connection with the land that you do on a bike.

We cycled for many years and I went from pushing my bike up hills, to slowly slogging up in bottom gear to being able to make good progress up to a summit. I could tell my fitness was improving, my breathing improved and my physical strength improved too. My hubby and I could cycle up to a hundred miles in under eight hours!

The worst thing that happened to me was a bike accident that eventually persuaded me to get a car. I should have continued to cycle.

CT scan

I had a CT scan today. I’m a bit scared of what they will find. But I was glad to have it done. I only had to wait a few weeks and because it was done on a bank Holiday Monday the hospital was quiet and my friend was able to find parking on the road near to the entrance (about a third of the normal cost).

We complain about the NHS but we don’t have to pay massive bills as you would have to in the USA. I’m not saying our system is the best, but we really appreciate it when it’s working well.

So anyway, I have to wait for the results. More worry and anxiety, but at least I might have an answer soon.